36 replies to this topic

[PhilB]

Maybe you can agree a compromise with Dr Cortes that you get a FISH at 3 months from when you stopped Sprycel rather than 3 months after you finally start again.  Presumably all the while your counts are low your 'normal' cells aren't being shut down because of overpopulation signals and therefore have an opportunity to grow  - so even though you're not taking a TKI something may be happening that's worth measuring.

And if that doesn't work, try playing the mental health card -  tell him you'll go crazy if he makes you wait that long.

[CallMeLucky]

"I wonder why - Dr. Cortes does NOT want me tested until 3 months after I re-start Sprycel?"

Perhaps he is concerned with what you will do with that information.  This day in age patients have a lot of information at their finger tips.  It is good to be empowered and knowledgable, but it can get dnagerous when we start acting on what we are seeing against our doctor's advice.  If he believes he knows what is going on based on his experience, then he may have reservations about running tests that would have you question his treatment approach.

I don't know what the right answer is, if I am being objective I can see both sides of the argument.  I do want to know everything about my situation, but the reality is I am not a doctor.  I am seeing a very highly regarded CML specialist (Harvard Grad, world class Cancer center, blah blah blah) I find myself often questioning things based on what I believe I know.  Sometimes I think ignorance could be bliss, but obviously I can't leave it all in someone else's hands.  Still at the end of the day I have to make a decision, I can try to control the treatment or I can let the very highly paid, very intelligent, qualified specialist control my treatment.  There comes a point where you have to let go and just have faith.  In this case, you are seeing one of the best in the world, so you just may have to accept that he is going to do it the way he wants.  You (colletive you, really all of us) have to decide to be the patient sometimes.

Or you can say "this guy is bat sh** and go find another doctor, lol.

I have heard in your posts that trust Cortes and for the most part it is just trying to understand the logic behind it when it seems somewhat counter to what others have experienced.  I get that and I would be in the same place.  This certainly isn't easy, the uncertainty is a real bitch.

Anyway, I think the last time you commented on how you were feeling you said you were feeling great, so that is something to be happy about, my general feeling lousy is taking its toll.

I hope your counts conitnue to improve and things work out (wether that be spontaneous remission or control with a TKI that doesn't make you feel like crap.)

[rct]

It could be as simple as having a sincere and vested interest in seeing Sprycel work without intervention.  That isn't a bad thing, it is the way it is though.

rct

[Tedsey]

Perhaps I have control issues, but I would want to know why my doctor is making the decisions he is, especially when the treatment is so unconventional.  I understand that we need to be patients, but we are whether we like it or not.  And I do not see any reason why our doctors cannot keep us informed every step of the way if we choose to be.  I feel we are, at least, owed this being cancer patients, and long-term ones at that.  When it is a matter of life and death, (a CMLer's situation), there are no rules for behavior.  It is not all about our doctors and what they think is best for us (or themselves).  Our input and what we want is just as valuable.  This is not a research study, this is real human life.  Michael, again, I wish you the very best.  I shall get off my soap box now.

Teds  

[cherylannes]

Hi Michael,

This is me not hijacking your post....

I agree with Tedsey, maybe it is also and issue of control with me, but I would not want to wait for three months after re-starting Sprycel for a PCR.  I agree with Trey and RCT (crazy eh, I used the words agree, Trey and RCT in one sentence, AND bonus, the earth didn't move...(she say's injecting humor....)). 

So, my position would be to say to Dr. Cortes, thank you for your opinion in waiting, but I prefer to be followed very closely until we are certain I am stabilized.  Does, he actually think that he will re-start you on a low dose of Sprycel and all your issues will be gone?  While I certainly hope that would be the scenario, especially if you are on a dose as low as 20mgs, it is hard ot say.  Seems to me like the right answer would be to say, let's re-start you on Sprycel and see what happens, if it looks like you have stabilized we can do PCR's every three months.  You may have said this before, and I apoligize for asking this again, but, did they do mutation testing when G failed?  You say you were 100% Ph+ before starting Sprycel after G failure.

I can only reference back to when I was newly dxed (10 years ago and counting).  When I started on IFN, my counts tanked completly, Pancytopenic, it took about 4 weeks for my counts to recover, no drugs were taken during recovery.  When I re-started IFN, interestingly enough, my Hem/Onc did do a FISH and guess what?  I was Zero FISH....That was in October, we did another FISH in December, January and by February we were doing FISH and PCR, because FISH was always negative.  I was able to stay on .5 MIU of IFN for a couple of years all the while being in CMR (PCRU)...So, I would rather err on the side of caution.  I worried that what if this Zero FISH was just an artifact of some sort.  The close monitoring helped me keep my sanity...

Additionally, be careful with the folate supplements, there is new controversies brewing....http://jnci.oxfordjo.../6/432.abstract

http://www.theglobea...article1915007/

RCT, I do agree with you to that insurance companies will balk at the additional costs because of PCRs being done every month if some patients opt to stop TKI.  But then again, if they are not taking the drugs, then there is no reimbursement happening either.  Wouldn't you say that PCR and FISH are way less expensive than a month supply of a TKI?  It is a Win/Win tradeoff.  On the other hand when patients are on a clinical trial to stop drugs, the monitoring is covered as cost of the trial I understand.  If not, it is easy to argue with your insurance provider that you are actually saving money.

Also don't forget that Australia now has four year data on patients stopping TKI's Dr. Hughes presented it at this years ASH and I had referenced it before.

Finally, Clinical trials in Canada for stopping TKI's are very close to starting...So, we will be adding to the data....

In peace,

Cheryl-Anne

[rct]

cherylannes wrote:
Hi Michael,
This is me not hijacking your post....
I agree with Tedsey, maybe it is also and issue of control with me, but I would not want to wait for three months after re-starting Sprycel for a PCR.  I agree with Trey and RCT (crazy eh, I used the words agree, Trey and RCT in one sentence, AND bonus, the earth didn't move...(she say's injecting humor....)).  

I refuse to participate in this any further without vehement disagreement.

cherylannes wrote:
So, my position would be to say to Dr. Cortes, thank you for your opinion in waiting, but I prefer to be followed very closely until we are certain I am stabilized.  Does, he actually think that he will re-start you on a low dose of Sprycel and all your issues will be gone?  While I certainly hope that would be the scenario, especially if you are on a dose as low as 20mgs, it is hard ot say.  Seems to me like the right answer would be to say, let's re-start you on Sprycel and see what happens, if it looks like you have stabilized we can do PCR's every three months.  You may have said this before, and I apoligize for asking this again, but, did they do mutation testing when G failed?  You say you were 100% Ph+ before starting Sprycel after G failure.

I agree with you, and I think most of the experts I've ever spoken to would do the same, at the very least lower the dose and monthly FISH/PCR.  At this point in time treating NEITHER condition, CML or neutropenia, doesn't seem right to me.  But I am not an oncologist, I don't even have CML.

cherylannes wrote:
RCT, I do agree with you to that insurance companies will balk at the additional costs because of PCRs being done every month if some patients opt to stop TKI.  But then again, if they are not taking the drugs, then there is no reimbursement happening either.  Wouldn't you say that PCR and FISH are way less expensive than a month supply of a TKI?  It is a Win/Win tradeoff.  On the other hand when patients are on a clinical trial to stop drugs, the monitoring is covered as cost of the trial I understand.  If not, it is easy to argue with your insurance provider that you are actually saving money.

It may be that is true, but it doesn't work like that in the American Insurance Business, at least not for long it won't.  That kind of stuff would only be doable in a clinical trial for lots of non-medical reasons.

cherylannes wrote:

Also don't forget that Australia now has four year data on patients stopping TKI's Dr. Hughes presented it at this years ASH and I had referenced it before.
Finally, Clinical trials in Canada for stopping TKI's are very close to starting...So, we will be adding to the data....

Long discussion yesterday with our docs about this very idea.  It won't be happening in Americur for a very very long time.  Different mindset, different medical approach, and here is the most significant part of it:

Europeans, Candadians, I suppose Auxtralians, subsidized medicine.  Taxpayers paying for very few people to take very expensive drugs, they are of course motivated to study such things.  Ours are not.  They would and will tell us should such a trial ever come up, wherever it may be, but they also do not feel that she would be a candidate for such a thing at all.  In fact, they feel that NONE of their patients would be candidates for such at thing.  They think it would be a disservice to ask long term remission patients to give up that which has created their long term remmission, and have a fairly high probability of not re-achieving that remission, because cancer treatment in general teaches them that that is what happens when long term deep remission is lost, it doesn't just come back.  While they would support her decision to pursue such a thing should it ever be available and she decide so, they would advise her against it unless there is significant data indicating NOT relapsing.  There isn't.

So it is good for a significant portion of the world, but it is not happening here any time soon.  They and Druker fully expect she will die a long time from now with CML and not from it, still taking whatever TKI there is at that time.

I'm not arguing with you or tinkling on yer New Years Parade, just keeping it Real for the yanks(Yankees, Americans) reading this, and for us.  We prefer reality, no matter how much it doesn't meet our hopes, and the reality about these things is just not that rosey at all.  For us, here, in this country, that is.

I hope you folks in the other countries of the world continue on with it and that it blooms into something useful for everyone.

rct

[cherylannes]

RCT, thanks for your comments.

On the subject of not being able to get insurance coverage for additional PCR's in the US, I actually speak form my American experience ( I am a dual National and have lived in both countries) and follow some of my American CML friends.  I know of two cases where the patient successfully argued to their provider and got the coverage...But that is not the point, because one really should do this within the context of a clinical trial were this isn't really an issue.  To that point I have listed three clinical trials in the US that are recruiting regarding stopping TKI.  See the links below.

I know this is not relevant for your wife, but like you, I certainly hope one day it becomes relevant to her.  I had written to Tedsey about my friend who has had CML for about 13 years and up until last September had never had a CCR.  But after 5 years on low dose Sprycel (40 mgs which was bumped up to 50 mgs, once daily), given to her because her counts crashed all the time and had to keep stopping and starting therapy, in January of this current year, a BM showed that she has finally achieved CCR and is likely now even in MMR, waiting for a second confirmation of the PCR.  It was a very long haul for her.  But we all feel here, Doctors and a few other patients, that it was the ability to lower her dose drastically that allowed her to stay on treatment that helped her get to where she is now....Early on she was on Neupogen shots as well.

This is true that the governments here do subsidize health care with tax payers money.  However, I am interested in all the scientific work that is starting to show that it just may be possible for some patients to come off the drugs safely.  With this data emerging, the next quesiton to ask is how ethical is it to leave patients on a drug therapy for too long, which may also compromise their health.  Clearly I am encouraged by the research in this area, because it would be great, and it is becoming imperative that we understand this better.  On the other point of worrying about relapse and how well the patient may or may not respond to re-starting treatment, this is where it is critical for close follow up.  Patients in the STIM trial and the Australian trial were all closely monitored and relapse was caught quickly, and, the studies show that these patients quickly regained their good response to the drug.  However, I am aware of some patients in the US as well as Canada who did not advise their doctors and arbitrarily stopped the drug, but because they were not being closely monitored by the time the relapse was caught, they were in serious trouble.  What we discuss here is for discussion purposes only and is not meant to encourage patients to try this without being assured that they are closely monitored.

Just one more thing about healthcare here in Canada as I can compare the two; I rather like it.   Sure it has a few bumps and kinks and it is considered to be very unpatriotic if as a Canadian you do not complain about the health care system.  Canada does need to improve access for newer drugs for Canadian Cancer patients, and wait times do have to be reduced.  But in general, it is a good system. A little bit of work and patient advocacy and we do tend to get things done at the end of the day....Speaking of which, I am off to see the Ontario Minister of Health this morning regarding some access issues....

Clinical Trials:

http://clinicaltrial...erm=CML&rank=62

http://clinicaltrial...rm=CML&rank=129

http://clinicaltrial...rm=CML&rank=203

[PhilB]

You could get even more cynical than RCT (nah, not possible) and say that the other side of the coin is that in the US system a CML patient represents a very nice, long term revenue stream and so what hospital is going to suggest that the patient should try something that would possibly stop that revenue stream?

[rct]

I definitely see how it could be viewed that way, but it isn't.  CML patients and their pesky expensive drugs are very costly, they generate no revenue stream for anyone.  Our blessing or problem depending on your view, is that the insurance companies just haven't figured out how to not pay for it.  I can assure you, once they do figure it out and can blame the government, they will stop paying for it, and they'll get away with it.

rct

[valiantchong]

Wondering why there is no one here to share their Stop TKI experience to at least give us some hope for cure..

[Trey]

Jack,

Hi.*

* As Yoda might say it.

[CallMeLucky]

Who's this "Jack" anyway?  And what I want to know is why does everyone keep saying "Hi" to him.

[mck_001]

I always learn so much on your posts, Michael.  Many prayers for you!  I had low counts on 100mg of Sprycel, but am holding my own with an ANC at about 1.2 on 70mg and my platelets are staying right around 140.  I have another FISH/PCR via bone marrow aspiration next week with Dr. Cortes, so we'll see how I am responding cytogenically and molecularly on the 70mg.  100mg put me in CCyR after a couple of months, so I'm hoping 70mg is working strongly at the molecular level!

[Tedsey]

Talk about hi-jacking a post...somewhat... It appears that it is fine with my hem/onc that my WBC are in the 1s, ANC between .5 and 1.0 and PLT 20-30K.  I have been walking around like this for over a year (I had a couple of high CBCs where my WBC came in around 2.0 and ANC a whoppin' 1.9...once).  I am staying stable and there is no talk about reducing dosage, (Sprycel 100mg), or going off and on.  Although I have reached CCR, my PCR value was still somewhat high last marrow check (1.334% with the lab standard being 0).  Maybe that is why we are staying with the 100mg do or die.  I am somewhat in the same boat as Michael with grade 3-4 myelosuppression, but I achieved CCR after changing to Sprycel and being on it 3 months.  It appears we are both walking time-bombs.  I could hemorrhage and get some infection at any moment that I have trouble fighting, and Michael is also at risk for infection with even lower ANC.  But alas, we are both OK and have been fine (knock on wood--I read somewhere that most people with CML end up succumbing to infection and rarely the disease).

Like RCT mentioned, I would feel insecure about not being shot up below ANC .5.  Perhaps I am just convinced that the "conventional" route is tried and true (but it really and actually isn't in a CMLer's case--I am talking about G-CSF shots).  But it is all I have known.  I hated the Neupogen/Neulasta shots, but I also felt that there was no other or better treatment (rock and a hard place---my WBC hardly recovered when I had my first breaks after dx on Gleevec--the time-off strategy was a bomb, like Michael, but the longest of my 2 breaks was was 3 weeks, not over 4).  Per Dr Drukers advice to my last onc (in Dec. 2009), I was convinced that I should not go off the TKI again (and had to be on it anyway because of the "shots"---that is, WBC stim shots without a TKI in one's system may cause the CML to get worse).  It appears Dr Druker has not changed his stance since then.

Now my world is shaken again upon talking to an M.D. today whose wife traveled to Switzerland for stem cell treatment for CLL (not a transplant).  She is now disease-free. (This should be another thread).  Makes me wonder about all the roadblocks to the advancement of medical treatment in North America (and maybe for some countries with national healthcare).  I have never heard of this kind of stem cell therapy, (likely illegal here and too costly for most public programs to even consider---kinda like Phil's frustration with what TKI the government will pay for in the UK).  But then again, I have only been formally acquainted with CML for a little over a year.  It has been a crash course and I am still trying to sort it out.

Teds      

[scuba]

This is all fascinating to me - especially the different data and outcomes we all are experiencing - and the different treatment paths the same Oncologist has us on.  As I read this - I have been off all TKI's of any kind (Sprycel specifically) for 5 weeks now.  Tomorrow I get another CBC.

Think about that.

For 5 weeks, I have been living a "normal" life in that I eat, play and do what I did prior to diagnosis.  The only difference is that I now have KNOWLEDGE of what is in me.  I have CML.  So each day, I know is another day closer to some sort of reckoning.

Tomorrow, I go in for another CBC.  I expect to find that my ANC is higher.  How much higher...maybe 0.6.  WBC = maybe 1.8 -2.2  (I'll report what it is and we can see if my guess is correct).  What I care most about are my Platelets.  If they are still normal - then I believe something fundamental is going on in my marrow to keep CML in check (just a guess - no data yet).

I will also DEMAND a FISH/PCR test to be done.  I want to know if bcr-abl is growing or decreasing.  I have a suspicion it is dropping.  I believe this because if the cancer cells are growing (more Tyrosine Kinase pumping out) - then the cells should be expanding a lot - my platelets should be through the roof.  And they are not.  I don't by the "regrouping" business.  It's just biochemistry at work.  The more chemical produced, the more signal to grow (TK).

As for Dr. Cortes wanting me to 'wait' before re-starting treatment without any other intervention.  I believe he has data to suggest this works.  He as much told me so.  Continuous use of Sprycel at 70mg + should put me into CCyR by 3 months.  It's fast.  The Sprycel has clearly done something for me.  He believes Sprycel (and Tasigna) give him the time to do this.  Gleevec did not.

Sometimes its' o.k. to do NOTHING than to guess.  Being pumped full of stim shots and other chemicals may make things worse down the road.  As long as my counts are recovering - I can appreciate Dr. Cortes' approach to hit the cancer when my body is ready for it (i.e. counts recover) and keep hitting it on and off until my body normalizes.  I am more concerned that STim shots (neupogen/neulasta) will encourage cancer growth. 

And finally - what if my PCR shows a big drop in the absence of TKI?  I will stay off it and see if it continues to drop on its own.  And if it does - imagine that.

Thanks for all of your thoughts.

[mck_001]

Michael, you've been anything but "textbook" so I'm all for an anything but textbook recovery!!  The difference in the way I feel on 70mg of Sprycel versus 100mg is unbelievable.  I still have side effects I'd rather not have, but they are more annoying than truly bothersome.  I think in my case, (as long as FISH/PCR look good next week!!), it really was just a balance issue.  My local onc thinks I should have switched drugs rather than try a lower dose of Sprycel.  My local onc doesn't like how potent Sprycel is compared to Tasigna and Gleevec.

Hoping for great counts tomorrow!

[Susan61]

Hi Michael:  Trying to catch up on what has been happening, and I hope you do well with what your trying to do.  I know how determined you are to find out something new that works.  I have been on and off here lately.  Been busy dealing with a blood clot in my leg, and was in the hospital for a week.

Now I am on Coumadin, and they are trying to see if its the Coumadin that is making me feel so lousy.

   Like I said I missed a lot of the goings on here, but you sound good.  Take Care of Yourself.